Former doctor makes difficult, stubborn patient

Published 4:52 pm, Monday, June 24, 2013

Q: My situation is somewhat unorthodox. My mother, who is in her 80s, is a retired physician. She has been diagnosed with a disease that makes some of her blood results very abnormal. Her potassium is high all the time. This is apparently because her kidneys can no longer clear it. She has some kidney damage, which she says is not too bad. She states she is controlling this problem just with diet, and isn't taking medications. Here is my issue -- I do not know how much information my mom is withholding from me. When she finally told me about her potassium level and I checked it on the Internet, it appeared that it was dangerously high. So my question is, how can I approach my stubborn mom so I know that she is getting the correct treatment, but not offend her?

Liz

A: There are three immediate issues we need to discuss. First is the disease itself and how to manage it. Then there is the main issue of our loved ones often holding us hostage emotionally by not giving us the whole story about their health issues and how to approach this. Finally we are dealing here with the fascinating phenomenon of an aging doctor now being a patient and the will, or lack thereof, to give up control.

I think that the disease described here is called hyporeninemic hypoaldosteronism. This means that there are low levels of two substances in the body -- rennin and aldosteron. Both are responsible for managing the balance of salts and acid level in our blood. As a result, usually due to diabetes of some degree of kidney failure, both rennin and aldosteron levels are down. This in turn makes the kidneys unable to get rid of potassium and makes more acid stay in the blood. Both can be dangerous, even lethal. Since this condition affects people gradually, our body has plenty of time to adjust. Paradoxically, one of the solutions is to eat a high sodium diet. Yes, I know this is against what most of us are told to do, but patients with this condition can pig out on the Chinese takeout. "What about high blood pressure risk?" you might ask, and you are correct. Elevated blood pressure is one of the big risks of high salt content diet. This is also why almost everyone ends up taking some extra medications to lower blood pressure, usually water pills. When the potassium level gets way too high, many patients will have to take a substance called kayexelate which binds potassium from the food we eat and makes the levels in the blood safer. It is impossible to have a diet without potassium in it.

Though it's complicated, I am certain this problem can be tamed under care of a good kidney specialist and the primary doctor. So that brings me to the issue of the patient also being a doctor and how this influences the process of dealing with a complex illness.

Before we get to this, however let's answer Liz's question: How exactly do you respond to your loved one not sharing full information about their illness? As you suspect, this is a very common practice. I do not know about you, but my mom is notorious for only giving me half of the story on each of her health problems. When confronted about this, my mother always says that she does not want to worry me, when, in fact, I worry much more because I do not have the whole picture.

I suppose this happens because we all need to have a sense of control. That includes our parents. They worry, I suppose, that when faced with bad or serious news, we will start demanding of them things they really do not want to agree upon but will for the sake of making us happy. I think that the only way to break the cycle of receiving half the information is to confront this worry.

If we state that we will always honor whatever our loved ones want or do not want to have done to them in face of the critical illness and that they will stay in charge of their lives for as long as they can, we just may get somewhere. We need to do this, even if we do not agree with their point of view. This is very hard for some of us, as we crave control as well. My approach would be to say that I worry and that knowing more will make me worry less and help me, while not affecting the actual decisions made about this issue.

So how about doctors who get sick and become patients? Well let me tell you -- we make patients from hell. First of all, doctors are extremely distrustful and do not get comfortable with other health care professionals easily. We have just impossible standards to meet. We somehow forget the times when we are late ourselves or rushed or not the most pleasant. We want all our doctors to be all Nobel laureates. We expect them to be never wrong, always super polite and patient just like the Dalai Lama.

But the biggest problem with the doctor becoming the patient is getting us to realize that we cannot be a specialist in everything. This was very clear when I was giving birth to my second child. After many smart comments from me, a wise midwife finally said "Dr. Skudlarska, when we all get there in age, we will come to you, I promise. But for now, listen to us, because we do know what we are doing." I did and was rewarded with an excellent experience. Maybe Liz can convince her mom to trust another doctor for help. This would be very good for both of them. My heart goes out to both of them.